That Kidney Has To Go Where?

Our meeting with Dr. Healey went well. We heard all about how they are going to jam a 9-11 cm long kidney up underneath Isaac's liver and behind his peritoneum and intestines. I guess it's going to be more protected than I thought. That's good because otherwise this kid is going to be wearing his kidney shield even when he sleeps. Right now Isaac's favorite sound to make is that of a Mari Warrior and he purposefully tries to head dive off the furniture, sometimes backwards.

I wasn't joking about the kidney shield. Isaac will get fitted for a plastic shield that wraps around the abdomen on the side of the transplant to protect it while he plays (or participates in some benign activity that Isaac could get injured doing when his genetic disposition and personality are factored in.)

Anyway, Dr. Healey also reiterated some of the risks of the surgery that we already knew. First, the grafted organ may not start working right away. Children's has only had one child in the last three years when this  happened, but if it does happen Isaac would have to be dialyzed until the new kidney started working. Because Isaac is small, they will probably cut into the peritoneum to do the transplant, leaving us with hemodialysis. Second, they are going to have to keep a close eye on his bladder to makes sure it can suddenly tolerate high volumes of urine. At this point, Isaac only makes about 1 to 3 oz. of urine a day. After transplant to keep the new kidney hydrated, Isaac will need at least 64 oz of water a day. Third, there is a risk of intestinal blockage because the transplant is squishing them. This can require additional surgeries to shift the intestines around.

When he finally got around to talking about whether Tim's kidney would fit in Isaac, he said that he had stuck kidney's from bigger dad's into smaller kids than Isaac. Isaac is bigger than Dr. Healy thought and Isaac's belly is all stretched out from the dialysis. And, men's kidney's are generally only 1-2 cm bigger anyway. 

At this point, I am wondering what all the fuss has been about then. The UW would not let Tim schedule any more of his testing until we got the okay from the surgeons on Tim's kidney size. To top if off, the UW had not yet sent over the ultrasound results yet. Arrg. But impressively, Dr. Healey was on it immediately. While we were still there, he called every single person in the UW transplant team until he finally reached someone. Turns out Tim's kidney is only about 1 cm bigger than mine at 10cm long. 

Today, Tim scheduled all of his tests and appointments today. Most of them will be on Friday, October 4. 

The Meaning of a Poopy Diaper

 

It’s hard to explain to people what I mean when I say that “dialysis is the easy part.” As a parent of a disabled child, the thing I have learned is that you do not grieve for the things that are totally out of the realm of normal, you grieve for the normal things that aren’t normal for your kid.

It’s not hard to hook Isaac up to a machine. His dialysis machine is a unique experience to Isaac. You cannot compare the experience to the experience of a healthy kid who just simply doesn’t have a machine.  However, every kid gets a poopy diaper, but a poopy diaper for Isaac means something entirely different than it does for a healthy kid.

First, Isaac’s body does not produce poop the way other kids do. Two of his medications are just to make sure he poops. Basically, this is the continual argument between the peritoneum (cavity where dialysis takes place) and the bowels:

P:  Ahhh, water, so good.

B: (gurgle noise) Hey, I need some of that!

P: Too bad, I’ve got the the Dileneal (dialysis solution) so I’m stronger and better than you! I’m taking what I want. You can have whatever’s left (chuckle) which won’t be much.

B: But…I need it! I neeeed it!

P:  Ha!

B: Oooh, here comes that Docusate, How do you like them apples?!

P: (grunt) Apples? What apples? Peritoneum activate super suction power!

B: (swoosh) Miralax to the rescue! I’m coming to take what’s mine.

And so the daily argument goes (sorry, I just couldn’t resist the personification)It’s a good thing Tim and I are here to act as independent mediator between the two of them, because they just don’t get along very well right now.

Second, Isaac has a dialysis catheter that exits his body from his lower right abdomen. Yep, right in range for explosive poop. Although in my experience, nothing is really out of range.

At the exit site, Isaac has a special gauze-type dressing with a waterproof patch over the top. The catheter is connected to a transfer set  (tube + connecter) which is what we connect to the dialysis tubing.  En total, he has about 1 foot of tube hanging out of his body with a 3 inch long connecter on the end.  During the day, the tube is held in a special fabric catheter belt around his waist.

Bacteria has three potential entry points: the connector, the catheter/transfer set joint, and where the catheter exits the skin. So basically, a big poop can mean big trouble if the bacteria gets through any of these entry points. There is a short window to get it all cleaned up to prevent this from happening. But even the clean up has its own risk for bacterial infection.

When Maddy pooped as a baby and the poop would mysteriously be coming out her sleeve, I could just strip her down and throw her in the bath. Isaac cannot take a bath. Bacteria in bath water are pretty much guaranteed to cause infection.  (Something to think about the next time you take a nice soak in the tub).

Isaac can get a sponge bath or have water dumped over him. And then he immediately needs to have the exit site dressing changed. A wet dressing could lead to bacteria getting in the exit site. Until about a month ago, it took one person to hold Isaac down to keep him from touching the exit site—another chance for bacteria to get in—while the other one changed the dressing.

So I would pray that Isaac would not get a big poop while Tim was at work.  I did figure out how, in emergency situations, to hold Isaac down with my legs while changing his dressing, but it really wasn’t easy or fun for anyone.  Thankfully, now he will hold his arms up when I tell him to…probably because he doesn’t want me to pin him down with my legs.

What does an infection in the peritoneum (Peritonitis) mean?

It means Isaac feels really really sick. It means the dialysis doesn’t work the same. It means immediately running a fluid sample to the hospital even if it's the middle of the night; hand mixing antibiotics and injecting them into the dialysis solution; manually administering dialysis; extra blood draws at Children’s hospital; three weeks of heavy antibiotics; diaper rash; and hours on the phone with doctors and nurses over the next few weeks. But emotionally it’s a little more challenging than all that …

The antibiotics put Isaac at risk for a fungal infection, so Isaac also has to take an antifungal medication every 6 hours (yes, that does cut into the amount of hours available for sleeping). A fungal infection means Isaac would loose his dialysis catheter and have to get hemodialysis. Hemodialysis on a baby could potentially ruin that vein, limiting future access points for hemodialysis, which Isaac will need when he is an adult. 

Until about a month ago, he was not big enough to get hemodialysis without priming the machine with transfused blood. Receiving transfused blood would sensitize him to antibodies. Sensitization means a higher likelihood of transplant rejection and more difficult to find a transplant match especially a third or fourth transplant. That means he would become dialysis dependent earlier in adulthood with fewer access points, possibly shortening his life and definitely decreasing his quality of life.

So in the back of my mind every time Isaac poops, my brain kicks into hyper drive to make sure I take all the right steps to avoid this travesty train:

Poop-->infection in the Peritoneum (called peritonitis) -->antibiotics-->fungal infection-->loss of catheter--> hemodialysis-->transfused blood-->lack of ability to get later transplants-->shorter lifespan

This is what is hard: constantly living with the vague threat that something as normal as pooping could turn into something tragic. It hasn't, and chances are good that it won't, but deep down the thoughts still linger.  

Isaac has had peritonitis once. It was not from poop, it was bacteria from a cold. He also was close to having to hemodialysis once when he was tree months old-- and that was one of the hardest days of my life.